Primary peritoneal cancer: Hi I'm zena I'm 4... - My Ovacome

My Ovacome

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Primary peritoneal cancer

Zena41 profile image
61 Replies

Hi I'm zena

I'm 41 years with 2 year old daughter

I was diagnosed with this yest not sure of stage still need fluid results.

All of your stories uplift me as I'm very scared

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Zena41 profile image
Zena41
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61 Replies
Elizabethe profile image
Elizabethe

Hi Zena. I am so sorry to hear this and I really feel for you. The diagnosis must have been such a shock and I am sure all you can think about is your two year old daughter. When I was diagnosed with high grade PPC my children were 14 and 9. I found strength to deal with the diagnosis but every time I spoke or thought about the children I fell completely to pieces. It will get better, once treatment starts and you are being looked after. Treatments are very effective and PPC is not the life sentence it might first appear to be. I hope you have loving support around you, you will find great support on here also. In my experience the NHS staff I came into contact with we're really supportive with the children, and McMillan even more so. You are so young and your daughter is so young to be going through this. Sending you love and strength

X

Zena41 profile image
Zena41 in reply to Elizabethe

Hi thanks for your reply

Yes I am so young very big shock the surgeon asked if I was Jewish which I'm not apparently very common in Jewish ladies and Asian ladies.

Zena41 profile image
Zena41 in reply to Zena41

Yes it's my daughter that's gonna make me strong and pull through this I waited 7 years for her no plans to go anywhere.

How long have you had this for Elizabeth ?

Elizabethe profile image
Elizabethe

I was diagnosed in January 2015

Zena41 profile image
Zena41 in reply to Elizabethe

Thank you for your support please keep in touch. X

Alikay profile image
Alikay

Hi Zena

I was diagnosed with PPC stage 3 in August 2013 and I still remember the shock I felt at the time. I can only imagine how much worse it must be with such a young daughter.

Treatments can be very effective and whilst I've had a bit of a rough time lately with ascities, hopefully things are back on track now.

Whatever you do, stay away from Dr Google - he can scare you witless. Feel free to use this forum as you need - I'm sure you will find much support and strength from people who really understand. Take care. Ali xx

Zena41 profile image
Zena41 in reply to Alikay

Hi Ali

Lovely to speak to you

Your true about dr google I have been thinking I have only six months to live cos of him

This forum is great.

You sound like you are doing well

X

Chamber profile image
Chamber

Hi Zena

So sorry to hear of your diagnosis.

I was diagnosed stage 4 ppc in May 2015. It came completely out of the blue and was a huge shock to me and my family.

You'll find lots of support and information on this site

Sending love

Judy xx

Zena41 profile image
Zena41 in reply to Chamber

Thank you Hun , I hope you are well x

Lily-Anne profile image
Lily-Anne

Hi welcome to the party

My youngest was 13 when I was diagnosed in 2012. I'm still clinging on by my fingernails lol

Lots of help and love here look forward to your updates

LA xx

Zena41 profile image
Zena41 in reply to Lily-Anne

Hi thank you for your support during this hard time

X

Gleedy profile image
Gleedy

Hi. I was diagnosed jan 2016 and could not have been more devastated or desolate. Its a surreal situation we never thought we woukd find ourselves in. I was stage 3c and spparently had a lot of disease. However, i had an amazing response to chemo and had surgery. I had 18 lots of a of a drug called Avastin too. Life goes on and you will get through it. Im writing this from a water park in Canary Islands and yes i have been on the slides. Id never have thought that possible a year ago after my op. Keep asking for help when you need it and many lovely ladies will answer . Good luck. Xx

Zena41 profile image
Zena41 in reply to Gleedy

Aww this is such a lovely message. And gives me hope.

I'm soo young and just a new mum also I don't know what to think?

My nurse thinks I could be eitha stage 2/3 most likely 3 with ascites??

Wow enjoy the slides and sun!! Live in the happiness you are creating with your family and here's to many more ...x

Yoshbosh profile image
Yoshbosh

Hi Zena,

I was diagnosed last year at 38 (with ovarian, rather than PPC) and I also have 2 little girls of 8 and 5. They were such a tonic whilst I was having chemo and recovering from my surgery, and they really gave me a reason to get up in the morning.

Do you have a good support network of family and friends? I found that invaluable for helping out with things at home, helping with the kids, making meals, keeping me company etc.

You can do it!

Yosh x

Zena41 profile image
Zena41 in reply to Yoshbosh

Aww hi your message is soo lovely, I hear you with regards to the children they give us a reason to be strong.

Yes I have a husband who is not dealing well with this.

I also have my two sets of parents who are incredible.

I hope you are getting over all the hurdles and you are well

Xx

Yoshbosh profile image
Yoshbosh in reply to Zena41

My husband struggled too. He ended up taking anti-depressants for several months. I think it must be tough on the supporters who have to stand on the sidelines, unable to do anything to help. We, who are going through it, just have to get our heads down and get on with it.

My husband and I both had counselling funded by Macmillan - if that's something you think your hubby would do, then it would be worth asking.

Zena41 profile image
Zena41 in reply to Yoshbosh

Wow thank you maybe this will come in handy , thank you.

How are you now health wise ? On the right path I hope !

X

couls profile image
couls

Hi, I was diagnosed February 2014 stage 3c ppc. Doing ok, going to Majorca tomorrow for a week. It is a shock but once you get a treatment plan you do feel better , it's the waiting that is really hard. I just looked at chemotherapy as something that was going to get me ok again and it has.

Take care Val . X

Zena41 profile image
Zena41 in reply to couls

Aww thank you that means soo much. I would love to take my 2 yr old on holiday x

Shqiperia profile image
Shqiperia

Hi Zena , I was diagnosed 2015 stage 3c . I also was 38 and my son was 18 months. I'm doing well so far almost 2 years from my first surgery. It will get better after the treatment end . Wish you all the best xoxo

Zena41 profile image
Zena41 in reply to Shqiperia

Hello we sound very similar , thank you for your message look forward to your updates x

Mrs_Atko profile image
Mrs_Atko

Hi Zena, just wanted to say hi and welcome. Sorry to hear of your diagnosis but hopefully you'll find lots of useful information and more importantly support here from all the lovely ladies. Wishing you well on this journey...you're certainly not alone. Jemima x

Zena41 profile image
Zena41 in reply to Mrs_Atko

Thank you soo much I'm glad I have met others going through the same thing and you are all positive xx

Katmal-UK profile image
Katmal-UK

Hi Zena, welcome to the forum. Ask away if you have any questions. I was diagnosed stage 3 and despite 2 recurrences still here working full time and in my tenth year. Best advice, which I think you've already been given is stay off google, you are not a statistic you are you. You'll be on a rollercoaster of emotion and, as you said, scared, scared of the unknown. Take it from the worlds biggest wimp, you can do this! Once you start yr plan of treatment and know what you are dealing with I believe things do settle down, u'll have bad days and we will all be here for you. Sending you a big hug, Kathy xx

Zena41 profile image
Zena41 in reply to Katmal-UK

Kathy hi

Lovely to meet you I did read your forum and you are my inspiration. You are doing amazing.

Keep up the good work,

I'm glad you got in touch xx

Katsmum profile image
Katsmum

Hi Zena

I was diagnosed exactly two years ago high grade stage 4 PPC and understand the shock for you and your family! You will no doubt feel bewildered and uncertain but as others have said it will get better when you have a treatment plan. I have done so much since this happened and am off to Majorca like Couls next week.

You will find plenty of support here any time you need it, love and hugs

Jane x

Zena41 profile image
Zena41 in reply to Katsmum

Hi Jane

Thank you for the positivity and hope.

Wow Majorca whereabouts. ?

We was actually gonna take Ellie to ibiza this year but all fell through with diagnosis .

Maybe next year??!!

X

Katsmum profile image
Katsmum in reply to Zena41

Hi Zena

We are renting a villa in the north of the island so hoping for some peace and tranquility but will no doubt get about all over the place . Don't let this hold you back - if you want to go away you can , just need to plan with your oncology team!

All the best Jane x

Zena41 profile image
Zena41

Thank you I will maybe next year.

We didn't have a honeymoon as I was pregnant 😳 I luv going abroad and my 2 yr old keeps pointing at aeroplanes.

Have a fab hol lots of sangria 😂

Zena41 profile image
Zena41

Hi everyone

Just wanted to ask does anyone follow a special diet ??

Zena41 profile image
Zena41

Also am I gonna loose my hair straight away ?

Emalou71 profile image
Emalou71

Hi Zena, I was 42 when diagnosed with stage 4 PPC in 2014. Very scared at the time and in total shock, so hard to take in and understand isn't it? My treatment plan consisted of 6 rounds carbo / taxol one ultra radical surgery followed by 3 more carbo / taxol I was clear 😀 Feb 2015 I then had 18 rounds of a maintenance drug called Avastin.

I hope that your team are able to give you a clear plan as to what they will do for you, once I had this I did feel better that I had a schedule of sorts. I did lose my hair after the second round of my chemo. Please let us know how you go and what your plan looks like. Stay strong & big big hugs xxxx

Zena41 profile image
Zena41 in reply to Emalou71

Aww hi em thanks for the positivity we are the same age xx

Zena41 profile image
Zena41 in reply to Emalou71

Hi Hun I'm starting the same chemo as you next week at christies 😩

Emalou71 profile image
Emalou71 in reply to Zena41

It's tough at the start understanding what's going to happen etc. But once you get this first one done you'll get into a routine. Have they said anything about hair loss? Mine all went after my second infusion. I had shaved it after the first lot as it was falling out everywhere I remember shaking my head at work to someone and they ended up covered lol.

I found the initial few days tough on this treatment a bit weak and nauseous. I was able to work for two weeks out of three which I was grateful for as it kept me occupied, I was on light duties but was nice not to have to think about treatment, illness etc for a few hours a day 🙄

Are you having it three weekly?

Sending lots of hugs your way I know how daunting all this is for you xxxx

Zena41 profile image
Zena41 in reply to Emalou71

Hi Hun

My nurse has just said I will be referred for wig when I start at christies next week ?

I'm starting carb/tax chemo I think? X1 every 3 weeks.

Then ct scan

Then surgery if needed ?

Wow you worked as well !!!.....

amazing 😀

ellseybellsey profile image
ellseybellsey

Hi Zena I am really sorry to hear your news, I was diagnosed stage 111c ppc March 2016, I had quite a shock at first and lucky that my children were grown up and thought 56 was to young to get this disease.

Please don't look at Dr google the majority of information is out of date, and also remember the stats are just that we are all individuals, I finished treatment September and doing really well even though according to google I shouldn't be here.

Hugs Ellsey xx

Zena41 profile image
Zena41 in reply to ellseybellsey

Too true !! Thanks Hun xx

Reega profile image
Reega

Hi! I also think I'm going to be diagnosed with PPC, but my surgery is on Monday, so then I'll know for sure the stage and grade. I had ovarian cancer five years ago with surgery and chemo. I had five wonderful years without any signs of cancer up until now.

I am 39 and have an 8 year old daughter. My daughter was 3 the last last time and I know it can be so rough with a little one at home.

This time I am staying away as much as I can from Dr. Google, too!!!! My gyne once feels positive about what he can do for treatment. Many things have changed in the last five years. Lots of good drugs. Xoxo

Zena41 profile image
Zena41 in reply to Reega

Hi reega

We will get through this together , you have done it before and will do it again I'm sure xx

Zena41 profile image
Zena41 in reply to Reega

Hi Hun been thinking of you , hope your well after op xx

Reega profile image
Reega in reply to Zena41

Thanks :) All went well, just a few extra small nodules on diaphragm that I wasn't expecting. Zena41, what's your story? .

Zena41 profile image
Zena41 in reply to Reega

Hi reefs that's amazing

Good news

Well I've just been diag with ppc not sure of stage ?

Tomorrow I go in for drain of ascites then biopsy fri which I'm petrified.

I had ct scan ultrasound last month and they found several small nodules of ppc and that's all I know apart from they plan to do chemo , no treatment plan yet tho.

What do they plan to do for your nodules ??

Xx

Ange09062016 profile image
Ange09062016

Hi! I'm so sorry to hear about your diagnosis. Stay POSITIVE! I was diagnosed first with PPC and after my debulking surgery they changed it to Fallopian/Ovarian Cancer. Stage 3. I was diagnosed 2 days after having my baby girl. She saved my life, that's how they found the tumors during my c section She is 10 months now. I have had my chemo and surgery and I'm three months with no evidence of disease!!! Stay strong and your baby will give you the strength you need with every smile she has! If you have any questions or need anything just message me!

Zena41 profile image
Zena41 in reply to Ange09062016

Aww what a lovely story , got me a tear.

She is ur strength

X

ZenaJ profile image
ZenaJ in reply to Ange09062016

This was so lovely to read it brought a tear to my eye. Some things are just meant to happen. Zena J x

ZenaJ profile image
ZenaJ

Hi Zena, I'm also Zena and you don't get many of us.

Good luck with your results they may not be as bad as you're probably worrying yourself about. Many of us are at later stages, I'm 3C myself and much older than you. I've got past the four year stage now so there is definitely a lot of hope for you and I'm intending to have many more years yet.

Best wishes, Zena J. xx

Zena41 profile image
Zena41 in reply to ZenaJ

Thank you zena 😘💕

Aww I have only ever met two Xena's!

You sound. Great and thank you for the inspiration

I just want to see my girl through schools so I will never give up xx

ZenaJ profile image
ZenaJ in reply to Zena41

There's no reason why you shouldn't see her graduate. You're still young and have a very good chance.

I've never met any other Zena's but I have a cookery book written by one and there's a Christmas cake recipe in it called Zena's Christmas Cake so you can guess which one I make every year. xxx

Zena41 profile image
Zena41 in reply to ZenaJ

Hi zena

That would be great to see her graduate all my dreams come true.

She is my everything we tried for ten years for Ellie and last two months I'm thinking she has been given to replace me....

not anymore since joining this forum you are all my inspiration. 💕

Wow a zena xmas cake 😆👍🏻

ZenaJ profile image
ZenaJ in reply to Zena41

Those sad thoughts do cross our minds occasionally but there will never be another you.

The ladies on here are great, so full of life and encouragement.

Keep strong xx

Zena41 profile image
Zena41 in reply to ZenaJ

Hi zena when I feel down I read this msg

As I haven't spoken to a oncologist yet and still unknown about survival etc

You have been through this and you make me feel positive that I will see my baby girl grow up

Xxx

ZenaJ profile image
ZenaJ in reply to Zena41

And I'm much older than you so you have a better chance I would think.

I'm watching my new grandson grow up and he's enormous now and not even eight months old yet. It's a great feeling being with the children it gives you something to live for (not that I didn't have things to live for it's just another bonus)

xxx

Zena41 profile image
Zena41 in reply to ZenaJ

Hi zena. There are women on here that are 60+ and survived 10/17 years. I'm amazed ,

All this positivity helps soo much today I've just been normal and blanking it out I think that's only way through xxx

ZenaJ profile image
ZenaJ in reply to Zena41

You just have to take each day as it comes and look at the good things that have happened. xxx

Zena41 profile image
Zena41 in reply to ZenaJ

Ps my Middle name is Jayne is yours ? X

ZenaJ profile image
ZenaJ

No it's Theresa. I think I sound like a nun if I say both names together. x

CancerCarerChats profile image
CancerCarerChats

Hi Zena, it is very scary in the beginning and the waiting is hard but you have come to the right place for information and comforting words. Speak to friends or Maggie's if you need someone to speak to. My mum was only diagnosed 4 months ago so it is still very raw for us and we are still finding our way as best we can. You can read about our experience so far which may help you.

Best wishes,

CancerCarerChats cancercarerchats.blogspot.c...

Heatherslade profile image
Heatherslade

Hi Zena and so sorry you have had this diagnosis but its not all doom and gloom as you will find when reading some of the posts on this site. I was diagnosed with bowel cancer early2015 and had surgery and chemo. Had further surgery as spread to peritoneum so went to Christies in Manchester and had cytoreductive surgery where they removed ovaries, womb, fallopian tubes, peritoneal lining and had a wash through with heated chemo. Upshot was they found ovarian cancer! Back to chemo for ovarian cancer which finished in January this year. Have since had two check ups, last one this week and my blood counts within normal ranges, for both and I feel fine. I walk play golf and about to go on third holiday this year! Don't know long term how things will pan out but research coming along with leaps and bounds so in a lot of cases cancer is a manageable chronic disease. Be positive, you will have low moments, I do myself but no reason why you wont have many years ahead with your daughter and family. I am in early 70s now and feel fitter than a few years ago!

Zena41 profile image
Zena41 in reply to Heatherslade

Hi thank you. I certainly need this lift I feel like my life is about to be cut short I'm only 41.

I have just took my two yr old to the park and I have really struggled with breathlessness and fluid on my belly.

Can I ask does chemo get rid of it or just shrink it ?

Lizchips profile image
Lizchips

Hi Zena, I was diagnosed in 2014 stage 3c clear cell ovarian cancer. Been cancer free since. You'll be fine keep a positive attitude and hang out with positive people. It helps. Best wishes, Liz

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